Best and Worst - An informal poll

[Cirobi]

Since coming here I've been doing a lot of reading of everyone's experiences and things people have come across. Hopefully this hasn't already been done and I just missed it somehow. There is such a vast amount of different possibilities of what can happen and what kind of outcome we'll have from surgery. So, since I'm a little over 2 months from my own surgical date and in order to mentally and emotionally prepare myself for all of the potential ups and downs I may experience in my own recovery, I've been trying to come up with something resembling a full spectrum of possibilities. This has been no easy feat with all the wonderful sources of information.

I thought I would ask a few relatively general questions to everyone and hopefully it'll lead to a helpful resource over time. Also, who knows, maybe it can also be a way for those dealing with some really tough times that are getting them down to focus on some of the positives that have happened and may just be buried under the current pains.

1) What was the BEST thing that happened to you during your spinal ordeal?

2) What was the WORST thing that happened during your spinal ordeal?

3) What did you find was the MOST helpful in your recovery?

4) What was the LEAST helpful in your recovery?

5) Is there anything you wish you did or wish you were able to do before surgery that would have made life easier during recovery?

Now, I realize some of us on here haven't even gone under the knife yet, so it doesn't matter if it's pre or post-op or even if your recovery process is still in progress. I figure everyone has likely had some good/bad helpful/unhelpful things happen at any stage of the process. If this wasn't put in an appropriate forum, definitely let me know. I don't mind it being moved either if it's in the wrong spot.

Thanks everyone!
~Sara

[Terry]

I am glad I went under the knife in good physical shape. I went in at 163 Lbs. and 10% body fat. It definitely helps the healing process. I am also glad I did not baby myself when I got back home. I got back in to living life.

I also am happy I gave myself 2 months from the surgery to go back to work. It was an *** kicking surgery and I needed to stay home. As it was I still got pooped out easily for awhile when I went back to work. And I have a desk job so I am happy I carried on some self discipline. I went back to work within a one week period of time after my first neck surgery in 95.

I am also happy I got a decent chair when I got back. I had the company buy me a decent Herman Miller which was over $1,000 for a chair. I'm worth it and have been the executive of the company for going on eighteen years. They also needed to take care of my spine.

The best thing that happened was getting Blue Cross to pay for the surgery. The worst thing to have to go through was mediation with the couple whose dog plowed in to my bicycle. I hate State Farm and consider it to be the crappiest insurance company on the planet. That was the second ordeal where one of us got injured and we had to fight with them. The first was my wife several years ago and the second was my accident. I would sue State farm in a heart beat if something happened to me again. I would not even wait to hire an attorney. They are pond scum anyway and you have to let them know that you are not afraid of them.

The least helpful was nothing. I believe everything worked out the way it needed to and I am grateful for whatever I have today. I sure have been to hell and back.

Nice idea for this thread.

Terry Newton

[sahuaro]

I love open-ended questions because I get to interpret them any way I want!

The best thing during my spinal ordeal: (looking back there were at least a couple)
(a) oddly, the best thing was that the local docs were not helpful and were at times arrogant! It took years of trying one doc after another; during those years, cervical ADR was finally FDA approved and I was forced to look elsewhere for help--with good results!
(b) During the 7 years, I got to know my PT, massage therapist and trainer really well--and they are wonderful people!

The worst thing: Going through a personal injury trial against--you guessed it--State Farm. The trial was even more traumatic than the MVA.

Most helpful: After 7 years of working with my trainer, being physically fit. One specific example, was being able to use lateral muscles to lie down and get up after the surgery (and even knowing what and where the lateral muscles are!)

Least helpful: Can't think of anything!

[JudyW]

1) What was the BEST thing that happened to you during your spinal ordeal? <span class="ev_code_BLUE">I've had the possibility of finally feeling better with ADR.</span>

2) What was the WORST thing that happened during your spinal ordeal? <span class="ev_code_BLUE">The realization that now that it's done I can't change my mind. No turning back.</span>

3) What did you find was the MOST helpful in your recovery? <span class="ev_code_BLUE">My physical therapist constantly reminding me that I need to be patient.</span>

4) What was the LEAST helpful in your recovery? <span class="ev_code_BLUE">Workers Comp. They are incompetent, insensitive, clueless, and have no comprehension of what it feels like to be in real pain and need real help. </span>

5) Is there anything you wish you did or wish you were able to do before surgery that would have made life easier during recovery? <span class="ev_code_BLUE">Made better use of my paid time off from work after surgery. </span>

[OsteoRach]

1) What was the BEST thing that happened to you during your spinal ordeal? I learnt patience, to put myself first (we;; higher on my list), and not being afraid to ask for help. Also, made me truly appreciate how great my employer is

2) What was the WORST thing that happened during your spinal ordeal? My injury wasnt self limiting and didnt get better with conservative care

3) What did you find was the MOST helpful in your recovery? An amazingly supportive employer and work colleauges, access to a worldclass onsite fitness/rehab facility, my personal trainer, my osteopath, and ACC (paid for everything so far)

4) What was the LEAST helpful in your recovery?

5) Is there anything you wish you did or wish you were able to do before surgery that would have made life easier during recovery? I am awaiting surgery in May however i am trying to stay as fit and strong as possible

Nice post

[Harrison]

1) What was the BEST thing that happened to you during your spinal ordeal?

A: Finding my calling: launching the ADRSupport web site, discussion board and the non-profit. This has given me the opportunity to help others, learn and hopefully make a difference in our woefully inadequate healthcare system.

2) What was the WORST thing that happened during your spinal ordeal?

A: Battling insurance and BEGGING for healthcare coverage.

3) What did you find was the MOST helpful in your recovery?

A: Learning from other patients; talking to them on the phone was the most helpful. There are so many dimensions of complex medical information; much of it not easily revealed by email or posts. Listening to my body – and learning how to this – is a lesson that will continue to help me the rest of my life. Above all this, my loving and caring wife gave me the comfort and support I desperately needed to become well again.

4) What was the LEAST helpful in your recovery?

A: Same as the answer in #2 – having to worry about coming up with tens of thousands of dollars for surgery is not conducive to healing!

5) Is there anything you wish you did or wish you were able to do before surgery that would have made life easier during recovery?

A: Nope – I talked to a zillion people to think through all the things I needed for a smooth recovery. Every conversation I had contributed to a smooth and safe recovery.

[Cirobi]

Thanks for all the responses everyone. This is great! Keep them coming!

I know mine own answers will likely change as I progress through this adventure, but here's my own answers to my own questions (I've been contemplating them since I posted them).

1) Best thing to happen was my primary care doc giving me a diagnosis that didn't fit what i was feeling (i.e. feeling severe centralized pain in my lower back and being told it was "mild arthritis"). That inaccurate diagnosis combined with being brushed off the next time the severe and limiting pain happened pushed me to investigate further.

2) Worst thing to have happen was being in severe pain after such a simple movement such as standing up. I haven't been quite that scared in my life as far as I can recall

3) Most helpful category actually has two things (aside from finding these forums).
a) having a coworker who had an orthopedic office he held in very high regards. He was the one who recommended I push to get the MRI my primary care doc wouldn't send me for and visit 3B Orthopedics here in Philly.
b) having an absolutely amazing boss and job. I was somewhat scared to talk to him about needing to be out on disability but only because I didn't know what kind of restrictions i'd have as far as work went (other than the disability pay scale terms I already knew) and I knew the earlier I spoke about it the better. Turns out they're willing to let me work from home for quite some time after my surgery (within reason and pending complications of course).

4) Least helpful - so far just the medications my primary doc insisted I keep taking for the wrong diagnosis (yea, stopped those once i noticed they weren't helping - fortunately it was just an anti-inflammatory and not something more heavy-duty)

5) My one wish at this point would be to somehow drop the other 30 pounds of weight I planned on losing (leftover from a steady gain over the years of avoiding most forms of exercise due to the after effects of pain), but as my back pain gets worse I don't foresee that happening prior to surgery. I'll keep on trying between now and then though. This thread is also part of my effort to feel as prepared as possible going into this surgery (though who can truly be fully prepared for something so major?).

Thanks again everyone for the participation so far. I hope folks are finding the responses as helpful as I am.

~Sara

[ZorroSF]

1) What was the BEST thing that happened to you during your spinal ordeal? <span class="ev_code_RED"> I can now spot a bull**** medical artist in just one office visit.</span>

2) What was the WORST thing that happened during your spinal ordeal? <span class="ev_code_RED"> Not taking my health into my own hands and hoping that surgeons saw my best interest at heart</span>

3) What did you find was the MOST helpful in your recovery? <span class="ev_code_RED"> seeking out various forms of physical therapy (i.e., pilates, gyrotonics, etc...) I wish had done it 10 years ago. </span>

4) What was the LEAST helpful in your recovery?
<span class="ev_code_RED">doctors who refused to listen to a word I said and just pawned me off onto other quacks in their office or hospital because they refused to hear that their surgery wasn't a sucess. </span>

5) Is there anything you wish you did or wish you were able to do before surgery that would have made life easier during recovery?

<span class="ev_code_RED">Wished I had found an amazing PT who had seen and treated my condition beforehand. It's been an agonizing recovery and had I found someone beforehand who could spot my various conditions I would've avoided unneccesary surgical techniques like ADR.</span>

[LBP]

1) best thing that happened to you during your spinal ordeal? When I was forced to move home and live with parents I got the opportunity to really get to know my little neice and nephews!

2) Worst thing that happened during spinal ordeal? pain, stress, unknown future, having to fight for drs to dx what's wrong, fighting for insurance to cover surgery, moving back home with mom and dad while in mid 30s because I lost my career, independence, sunny socal beach apartment, lost my social/dating life, went into default on school loans and judgments from other debt, lost some good friendships because I couldn't be active and hang out with them and they couldn't see my injury therefore they didn't understand it.

3. Most helpful in recovery? getting as many assistive devices as possible: bed rail, walker, 2 grabbers (for when you drop one!), raised toliet seat, hand held shower and shower caddy, bathtub hand rail, should have gotten bigger wheels for walker because the small ones keep getting caught in tile and walkway ruts. Keeping up with the strongest pain pills the drs will let you have to keep your spirits up and maintain as much mobility as possible. going in the pool to walk around, you can almost forget how much pain you are in. Having caring family members around 24/7 post op to get stuff for you on demand without questions, complaints, attitude etc.

4) Least helpful in recovery: drs and nurses that don't listen and don't trust your instints when you think something is wrong and ignore or brush you off. Hosp staff's SLOW response for bathroom assistance, pain pills, etc. Nasty and /or flakey attitudes of Hosp nursing staff. Lack of Hosp staff's respect for patients modesty and privacy. Last of Hosp nurses explaining what they are doing and worrying that they forgot about you when they left you without re- connecting leg compressors or oxygen etc. Having family members push you too hard too soon, and feeling like you have to entertain them if they stay with you while you are out of town post op.

5) wish you could do something else before surgery to make life easier during recovery? Wish I could have been able to exercise more, lose weight. As soon as I learned I was going to get surgery, I upped my private pilates sessions of 3.5 weeks and it would have been nice to have a couple more weeks to make a dent in my very tight hamstrings and get core even stronger. I'm convinced what I did manage helped me a lot. I also wish that H-wave electronic stimulation was available where I lived because it was such a comfort and relief of joint/muscle tension when I got in in socal. I would have liked to have a home care H wave unit. I wish I would have planned another week or 2 for recovery before flying back home.

[mgs32]

1) What was the BEST thing that happened to you during your spinal ordeal?
I gained an even greater appreciation for how amazing my family is. I learned that my fiance really will be with me in sickness. I was able to spend the first month and a half of my new nephew's life with him.

2) What was the WORST thing that happened during your spinal ordeal?
My parents were worried sick about me 24/7 and it was awful to see how much this upset them. This put a lot of stress on my personal relationships, both with my fiance and with my friends. It was really difficult to find the desire and strength to go out and have fun, never mind just be in a good mood.

3) What did you find was the MOST helpful in your recovery?
A woman at work who has spent a lot of time in the hospital gave me a water bottle to use during recovery. It was amazing. I'll have to find out the name of it, but it looks like a nalgene bottle (though it isnt), and has a big straw inside the middle of the bottle. The best part is, it doesnt spill. So you can just suck out of the top of it, without having to tip your head back (which is very difficult after surgery). And it was way better and held a lot more water than a plastic cup with a straw. It was a huge help and I would highly recommend it. Having a big reclining chair in the living room was a huge help, too. I lived on that 24/7 for the first week or so. Finally, having family that will get you up and moving around was great. Walks made me feel so much better.

4) What was the LEAST helpful in your recovery?
People questioning your decision to have surgery.

5) Is there anything you wish you did or wish you were able to do before surgery that would have made life easier during recovery?
I wish I had prepared my family that the pain wouldnt be 100% gone right after the surgery. They were so concerned when I would say that I had some tingling in my arm/hand. It was difficult to explain to them that it was normal to continue to have this trouble for a few months after.